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  1. hotblack

    Mental activity causing physical PEM, specific symptom patterns?

    Lol, true, and can you imagine how much your jaw would ache after chewing gum? Chewing. For pleasure. Madness!
  2. hotblack

    Mental activity causing physical PEM, specific symptom patterns?

    Definitely does do for me. Everything becomes too much input! What others too have described, does remind me of what it was like early on for me, when I could still watch films, play games etc but within a limit. And it was perhaps more about fatiguability. All beyond me now. But equally I’m...
  3. hotblack

    Closed UK: DecodeME updates, was recruitment thread.

    It is worth contacting them https://www.decodeme.org.uk/faqs/can-i-change-my-consent-choices/
  4. hotblack

    Preprint Dissecting the genetic complexity of myalgic encephalomyelitis/chronic fatigue syndrome via deep learning-powered genome analysis, 2025, Zhang+

    Some of the symptoms for us seem to be the body trying to respond to whatever underlying problem exists. At least that’s what it sometimes feels like. That could explain the paradoxical nature? I also had a period of quite severe depression in my late teens (at least partially triggered by...
  5. hotblack

    Learning about the nervous system

    Different types of neurons and glial cells? What even are they? And how do synapses work? What is a synaptic cleft and action potential? I’ve found the Khan Academy videos and text particularly useful (partially mentioned above) all covering roughly the same information with some variation...
  6. hotblack

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    My point is about the use dehumanising language particularly on top misunderstandings of other people and in this case cultures and countries. As soon as you take a disagreement and instead dismiss because others are not or are less than human I am concerned we are slipping into dangerous...
  7. hotblack

    Preprint Dissecting the genetic complexity of myalgic encephalomyelitis/chronic fatigue syndrome via deep learning-powered genome analysis, 2025, Zhang+

    The paper focuses on the genes which may be involved. But the model uses knowledge of protein interactions too. I wonder if it’s possible to get details of which protein interactions were deemed to be important. Can the network be examined to pull out these? I think the paper talks about modules...
  8. hotblack

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    Maybe we should focus on critiques of content rather than questioning if people are or are not people?
  9. hotblack

    Closed UK: DecodeME updates, was recruitment thread.

    It may be worth seeing my question and Andy’s response in the Zhang paper thread too.
  10. hotblack

    ME/CFS as a biological information processing problem

    Since this has come up a couple of times now. And it’s a very fair counter to my original comment of there being no damage, it is uncertain. However… Do we know if this damage is common? Do we know if any damage is causative of symptoms? Or the result or byproduct of them? Or even unrelated? I...
  11. hotblack

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    Bravo @Joan Crawford that final sentence was quite the flourish
  12. hotblack

    Mental activity causing physical PEM, specific symptom patterns?

    Two instances of fairly short lived PEM earlier this year that I have some notes from. One from physical activity (sitting up and moving around to cut my hair) another from cognitive/sensory (a very loud and chatty visitor). Both followed similar patterns of aching, more fatigue, feeling ill or...
  13. hotblack

    ME/CFS as a biological information processing problem

    That is fascinating (but also sounds pretty unpleasant!) thanks for explaining @Kitty And thanks for the reading @Snow Leopard much appreciated
  14. hotblack

    Mental activity causing physical PEM, specific symptom patterns?

    For me the thing that changes the most is the underlying trend of how good or bad I am. Then physical or mental triggers are a layer on top of that. Along with all the other changes we have in exactly which set of symptoms or their intensity/duration. I would say there are some differences in...
  15. hotblack

    ME/CFS as a biological information processing problem

    From another thread but relevant to throwing idea around I think After some reading/listening on what happens at synapses during neural activity.. @Kitty are you thinking there is something happening which means once the neuron fires the channels just stay open so neurotransmitters continue to...
  16. hotblack

    News from PrecisionLife Ltd.

    This information has already been posted but it’s relevant to this thread and a bit fragmented when Imwas searching. So to bring it together.. A Press Release from PrecisionLife says First ever confirmation of long COVID genetic associations. This is going to be one of the topics discussed at...
  17. hotblack

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    Yeah 163 is part of NetEase which is huge in China. Good to see the article you linked talk about the history and homonyms, there’s very interesting creative and entertaining uses of language on the internet in China. This was linked to the dialling code needed to get online. For a while in the...
  18. hotblack

    I got fooled by AI-for-science hype—here's what it taught me. Nick McGreivy 2025

    I think that’s a really good analogy. It’s a tool. Or rather a range of tools, that when used for the right things by someone who knows what they’re doing can be great. But it is not a magic wand. I know some people still working in tech and doing lots of interesting things with AI/ML. But are...
  19. hotblack

    Assessment of Vitamin D Deficiency Prevalence in Adults with Chronic Fatigue Syndrome: A Cross-Sectional Study, 2025, Saranya

    I was just looking at this one, started off with an okish definition and then quickly goes into just referring to “CFS”. They apparently used the Fukuda criteria which may explain some of this but by the conclusion it seems to reach almost comic levels of misunderstanding
  20. hotblack

    [UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

    I’m all for us doing whatever we can to remove obstacles to people doing good research, including things which mean they can focus on that research. It would be nice if talented people didn’t have to worry about or make sacrifices and decisions because of things like costs of food, housing or...
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